There are a lot of you out there who have followed my fashion blogger journey since it began in 2010, which I am incredibly grateful for, and there are so many of you who joined me a couple of years, months, weeks or even a few days ago. Since my blog is so personal to me and I feel like we have built up a little community here which I trust and feel safe with, I wanted to explain to you something about my life that I have kept hidden from my blog all this time. This wasn’t because I didn’t trust anyone or because I’m ashamed, it was mainly because I wanted to make sure I could succeed in doing what I wanted to do without any sympathy votes or without it having an impact on my progress. 5 years have gone by now and I’m ready to explain things to you all, now that I know it wont have an impact on my blogging life and work.
I have M.E. Kind of similar to CFS (Chronic Fatigue Syndrome), but a lot more symptoms are involved.
I started getting ill with glandular fever when I was about 12/13 years old and after months, it had developed into M.E. I was going back and forth between hospital and doctors appointments for just over a year, trying to figure out what was wrong with me but after countless tests, studies, examinations and everything else, nobody really knew what was wrong. I found another doctor to visit and she ended up being my life saver. After a month or two of seeing her, we found out that I had M.E and that’s what was causing my problems and making me so ill, tired and sick all the time. It wasn’t until I was almost 15 that I was diagnosed, which was a crucial age for me with my exams coming up in school.
I actually ended up missing half of my last year of school, I missed most of my GCSE exams and was graded mostly on my coursework that I had managed to do. Luckily for me, I still got quite a few good grades which was helpful, but it was such a horrible time for me. Missing so much school because I couldn’t get out of bed or function properly was a disaster. I was a tomboy growing up which meant I lived outside playing football, basketball, riding my bike or skateboard etc and I wouldn’t have had it any other way. So having that stripped away from me which also meant that I lost a lot of my friends was the worst time of my life. Things truly got so bad back then that I was at my wits end and I spiraled into severe depression and anxiety. My current living arrangements back then didn’t help me at all, but my mum and dad have always been extremely supportive, as well as my nan and grandad, so having people around me who cared for me really did help me pull through those dark times.
I’m 27 in a couple of weeks so I have had the M.E now for almost 14 years, but I will say as time goes on and after pacing myself correctly, learning to cope with it, knowing what I can and can’t do etc really does help. I mainly wanted to make this post to let other people with M.E out there know that it’s not the end of your life. I met someone online a few months back who is having the worst time with her M.E right now, but I want so many of you to know that it will get better. You may not feel like it will, and gosh knows all those years ago when I couldn’t get out of bed I didn’t think it would, but it does. I promise. It just takes time and patience and that amount of time varies from individual to individual. I’ve met people who got better in 2 years, I’ve met people who only started to feel better after 20 years, and a whole range in-between. But the outcome is the same and that is that it’s not forever. Learning this is what got me through. Staying mentally strong is important.
What is M.E?
For those of you who haven’t heard of M.E or may have heard of it but don’t know what it is, I will explain. M.E (Myalgic Encephalomyelitis) in simple terms is a form of an inflammatory brain problem and an imbalance of brain chemicals. This is usually in the form of an injury to the Central Nervous System caused by disease, chemicals or an over stimulated immune system (mine being the latter, from the Glandular Fever).
Even the slightest problem with a brain function can cause severe issues as I’m sure you are aware, so when a huge part of it is imbalanced and upset, the body doesn’t function like it should at all unfortunately. It effects the entire body, including every system you have, from hormonal production to psychological and physical abilities. Unfortunately there is no cure for M.E and you can’t just take a tablet to fix it (maybe in the future you might be able to) so you have to learn to live with it and pace yourself to make the days easier.
Symptoms of M.E
There are so many symptoms of M.E that the list feels like it’s endless, but I will list the ones that I have and have had over the 14 year journey with it so you can understand a lot more about it. I will though be breaking this series of posts down into 5 or so posts so I can cover each topic in more detail and not create one huge post which is too much to read. So I hope you will understand more about it all by the end of the series. There truly are so many more symptoms, but I have listed the main ones.
Fatigue and exhaustion:
The main symptom of M.E is persistent physical and mental fatigue (exhaustion). This doesn’t go away with sleep or rest and limits your usual activities. It’s not the usual tiredness which you get at the end of a long day, it’s debilitating tiredness and exhaustion to the point of not being able to move.
Neurological signs and symptoms:
Inconsistent central nervous system function causing vertigo, disequilibrium and proprioception difficulties (e.g. lack of sense of ‘up’ and ‘down’ with eyes closed resulting in sickness and dizziness) – I also have a poor balance sometimes and excess sweating.
Temperature dysregulation and poor tolerance for hot or cold environments – meaning I can’t go from a warm building or car to a cooler place without shivering and reacting badly to the climate or going from a cooler temperature to some place warm without having a hot flush.
Hyperacusis (sensitivity to noise) and photophobia (pain/relapse on exposure to light) – this is especially on bright days, my eyes feel explosive and the noise causes me pain and distress. Especially high pitch.
Pain and pressure at the back of the head (where the head meets the neck) and behind the eyes – this gives me really bad headaches often and I also suffer migraines at the front and pressure problems.
Stroke-like or coma-like episodes – this is one I will be covering in depth fully in a separate post as it’s one I suffer with badly. It’s not exaggerated, it actually does happen.
Sleep paralysis, fragmented sleep, difficulty initiating sleep, lack of deep-stage sleep and/or a disrupted circadian rhythm – I used to suffer badly with sleeping problems, but now I am not so bad. I do have ectopic heartbeats though.
Vascular and cardiovascular signs and symptoms:
A very high heart rate, chest pressure, heart pain and a fluttering/straining heart – I have this frequently. Sometimes there are bad episodes where it wont stop fluttering or beating really fast, but I do manage to try and keep it controlled.
Very low blood pressure particularly when upright, orthostatic tachycardia/POTS and reduced circulating blood volume (up to 50%) – this is very common with me. My blood pressure is low most of the time, coming in at around 96/65 or so, but this is normal for me. My blood circulation isn’t great and if I mark or scar, it wont heal for a very long time and I have Reynauds from it, so permanent cold hands and feet.
Pain/discomfort/poor digestion following meals – this is an everyday battle. I developed many food intolerance’s and allergies over the years, leading me to go really skinny at one point and become really ill and malnourished since everything I ate hurt. I still suffer with the pain and problems now.
Muscular signs and symptoms:
Muscle weakness and paralysis (affecting all muscles including the heart, eyes, digestive system etc.) – this happens to me a lot. I can’t lift anything heavy, I can’t keep my arms raised high for long as the pain is bad, if my body decides its done too much, it will disconnect some limbs from its function. For example I can’t feel anything but a dull ache and pain in my legs and I can’t move them. I used to get a full body paralysis, but mainly now it’s waist down. These are temporary.
Muscle pain, twitching and uncontrollable spasms – this is common for me. I jerk and spasm a lot, often jolting my head or making a rapid arm movement. But the muscle pain is often something I battle daily.
Difficulty breathing and air-hunger – this one isn’t as common, but I have had it. Sometimes breathing is a struggle as you take deep breaths but they feel like shallow ones. It’s hard to explain.
Cognitive signs and symptoms:
Word-finding difficulty or difficulty or an inability to speak – not so much anymore, but years ago this was a big problem. I couldn’t think, take anything in or find the correct words to speak properly.
Difficulty comprehending speech or delayed speech comprehension – again like above, listening was difficult. At school I couldn’t take things in and still sometimes now, listening to voices is hard to understand fully what’s being said on a bad day, especially on a telephone.
Difficulty making new memories and recalling formed memories – there are times when things are bad that I can’t remember anything, I can go to another room and forget what I was there for within a minute. Sometimes old memories are gone completely and I can’t remember things I have done, but this is a lot better for me now. I would say 95% better.
Anxiety and depression – this was a huge problem for me, but I will cover it more soon.
Nausea, vomiting and feeling ‘poisoned’ and very ill – this was extremely common for me years ago. I would feel sick all the time and really ill, much like food poisoning. I do feel nausea still now, quite often, but not as extreme thankfully.
Throat and gland pain/tenderness and chills – my glands in my neck are permanently raised, they have been since I had the Glandular Fever, and often they get sore. I get store throats a lot and shivers.
Food allergies, alcohol intolerance, hypoglycaemia and sensitivity to common drugs/chemicals – I’m sensitive to foods, chemicals, medicines etc. I can’t be around smells like nail polish or perfume as they make me sick. Deodorant has to be a roll on (the same for everyone in the house) and a lot of things my body can’t handle. I can’t have lactose or corn flour, I struggle with acidic foods, I don’t drink alcohol and more.
Rounding it out
A lot of people with M.E are housebound like I was for a long while, and a lot of them can never gain back their pre-illness activity level. Learning to cope with this is the most important thing. You have to accept that things will not be the same, but you start again. You make a new lifestyle for yourself. You don’t let it get you down. I may never be able to play sports again like I used to, but now I don’t let that bother me. I enjoy doing other things which require not as much effort. It’s a pacing and staging situation where you do only what you can and you keep that as a routine, then as things get better, you slowly add new things in and increase. This has to be done so slowly though, over the course of years, because if you push yourself too much, you relapse. I know this only too well as even today I still will get paralysed, in a lot of pain and cause myself sickness if I have done too much. You have to know your limits. The worst thing is that you wont be effected from the exhaustion until 24-72 hours after. This often causes you at first to not realise what your limits are and if you have done too much as there’s no immediate notice, so getting the balance is tough.
Like I mentioned above, I will be writing individual blog posts on specific symptoms that I suffered or still do suffer with now, including the anxiety/depression, paralysis, tiredness/exhaustion, muscle/body pains and also the intolerance’s and sensitivities. Hopefully this might give you some understanding to the illness, maybe you might know someone with it or if you struggle with it yourself, I just hope it can help some of you out there. You can find out more about M.E on specific websites like this one too. Lorna xx.